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Topic: END OF MY ROPE!!! (Read 494 times) |
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KateA
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END OF MY ROPE!!!
« on: Oct 21st, 2005, 2:13am » |
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Three years, not a day cluster free. Take 300 mg topomax daily. Have tried mixture of other preventatives. My nuero is working on it.
Question is, I get hit 6-8 times/ day...what preventatives work for you? The reg pack of imitrex, amerge, relpax, etc. don't work, neither does Oxygen. Even Narcotics don't do their job for one reason or another, so I abandon (Actiq - my body acclamates too quickly and it stops working, same with percocet; demerol makes me really mean-spirited, blah blah blah) Anyone have suggestions for me? Tried the reg nasal sprays. Is there a narcotic nasal spray that might work? Or a remedy that I would not know of? .
Just crawling out of my skin for simply one day of relief from the little man living inside my head trying to pick hammer my eyeball out. You know...you all are good friends with him, right?
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| « Last Edit: Oct 21st, 2005, 2:24am by KateA » |
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zanychef
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i'm busting with a masx cant really go wrong can i
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Re: END OF MY ROPE!!!
« Reply #1 on: Oct 21st, 2005, 3:00am » |
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hi kate
i can offer no suggestions only support 
i'm a lucky one and the trex works for me
has your nuero tried any onther triptans with you
maybe some help
zany
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plenty of time to sleep now me headaches aint too bad
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Squanto
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Re: END OF MY ROPE!!!
« Reply #2 on: Oct 21st, 2005, 8:01am » |
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Hi Kate,
I'm sorry you're having this awful experience.
A couple of comments and questions:
Sounds like either you or your doctor are confused about aborting a headache and preventing a cluster of headaches. They aren't the same. Your note sounds like a random search of both abortive and preventive meds to see what helps. That may not be the case, but it has that appearnce.
For example, if you've only tried Imitrex in tablet from - you ARE going to be disappointed in the outcome. It's highly UN-likely that the tablets will cause an individual headache to recede or go away. By the time the any pill work on an individual headache the pain may have peaked and started to recede anyway, even without the pill. With injectable Imitrex (see the "Imitrex tip" link over to the left of this page) many of us cluster headache suffers get relief in minutes. Of course, it varies with each person - you won't know your response until you try. Your doctor should know if you can tolerate the injection. (that is no medical contraindications like coronary heart disease)
To end a cluster of headaches, a tapering dose of oral steroids (e.g. Prednisone) starting with a large daily dose and reducing the dose to zero over 10-14 days, has benefited lots of folks. At the time you're tapering the steroids, most docs will put you on something (hopefully) to keep the next episode from coming on. (e.g. Verapamil tablets)
One awful thing you should know is: of all the medications tried to help cluster headache suffers - none cure it. And the most effective ones found so far help less than 60% of folks. There are a couple of "off label" things that are said to be a little better than that. But even they only keep the beast caged up for a while.
There's a very long thread (topic) on this board discussing the pros and cons of cluster headache suffers using narcotics. The consensus is, as I read it, narcotics might help one get through an individual headache - but no way are they going to stop a cluster of headaches, no way are they going to keep the next headache from happening, and if you are really having cluster headaches the headache IS going to come back if ALL you use are narcotics. And that would be bad. And even worse you might start getting rebound headaches because you're taking the narcotics. That is, the headaches come on because you used the narcotic.
How did you arrive at a diagnosis of "Cluster Headache?" It may just sound like a label, and who cares about labels, but it makes a difference in what may work and what may be a waste of time, money and pain. An "episodic" sufferer has groups of headaches lasting days, weeks or months and then has pain free periods lasting days, weeks, months or years. A "chronic" sufferer has daily headaches (some days more intense than others) for more that 10 months running. It appears that "episodics' respond differently to various therapies than "chronics." Both types hurt but the long term prognosis is different.
Here's hoping you get relief soon
Squanto
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jcmquix
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Re: END OF MY ROPE!!!
« Reply #3 on: Oct 21st, 2005, 8:03am » |
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I think we have all been there one time or another, just not as long for me.. I have had a few times that nothing worked, I really don't know how I made it through... One Day at a time...
All I can do is offer you Support also...
Are you getting the night time hits ? You might try the Melatonin... I started taking 9mg each night before bed and it helped reduce the Amount & Frequency of all attacks for me, even the day time hits were not as bad..
I really hope that you find something soon that works, 3 years is a long time to keep going...
Wishing & Praying for you to get some PF time soon.
God Bless Ya
Charlie
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Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space. (burnt-toast)
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KateA
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Re: END OF MY ROPE!!!
« Reply #4 on: Oct 21st, 2005, 1:16pm » |
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At the risk of writing a long, long post, I did not go into the entire treament we have tried. I have a world renowned neurologist as my doctor here in San Francisco and am in good hands, this I know.
I am fully aware of the differences between preventative and abortive measures. On the preventative side, have tried prednisone, verapamil, lithium, ergotomine, topomax, betablockers, calcium channel blockers and antihistimines, melatonin. These have been attempted in many combintations and alone.
On the abortive side: Imitrex pill, Imitrex injection, zomig, relpax, axert, oxygen, lidocaine nose drops, assorted narcs.
I have also completely changed my diet: no chocolate, alcohol, nuts, dairy, sugar, or wheat products.
All of these things help a little, but in the end, still the hits.
Yes, three years is a long time, which is why I am reaching out, yet again, to see if anyone has found anything that is working well for them. The topomax is the only thing that has brought some control to my daily life. Yes, I understand that there is no cure.
Has anyone tried accupuncture?
Has anyone tried botox?
Just looking for suggestions, things I may not know about.
Thanks!
Kate
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JDH
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Re: END OF MY ROPE!!!
« Reply #5 on: Oct 21st, 2005, 2:08pm » |
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on Oct 21st, 2005, 1:16pm, KateA wrote:
Just looking for suggestions, things I may not know about.
Thanks!
Kate |
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Ever consider http://www.clusterbusters.com/?
A lot of folks have gotten long term relief going this route.
Jim
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9-11-01, to remember is to honor.
It's not what you know, it's what you can prove.
ECH established 1985
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rextangle
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Hello kate,
I stopped all meds a year ago, nothing worked for me (chronic) and the side effects of the meds were an additional bonus I didn't need.
I've been doing the clusterbusters treatment and that is the only thing that's helped me taming the beast. And all I use now as an abortive, is 02.
You may want to read about it at:
http://www.clusterbusters.com
Also, a board member, Floridian has put together a great page about various treatments and thearpies available.
http://www.med-owl.com/clusterheadaches/tiki-index.php
Try different things, ask questions, and come here for support.
CH.COM: The number one customer service with live chat enabled....
Good luck to you,
Rex
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BikerBob
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Re: END OF MY ROPE!!!
« Reply #7 on: Oct 21st, 2005, 2:56pm » |
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Hi Kate
I see that you live in San Francisco. I've been an episodic clusterhead for 30 years and I live in San Francisco too. Let's get together for a cup of coffee. I may be able to help.
Check the PM I just sent you.
BB 
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rextangle
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Way to go Bob, that's the spirit!
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jckgales
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Re: END OF MY ROPE!!!
« Reply #9 on: Oct 21st, 2005, 3:27pm » |
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Kate
I know how you feel I also am going on 3 yrs. I use a combo of zomig stadol and o2 the stadol is a nasal spray which is a narcotic , it works pretty quick and will probably knock you out , but if you take to often can be habit forming and not work as well. Im going to pain clinic tues. for possible nerve block. i will let you know how it goes if you like. If no sucess I will be going the alternate route also.
hang in there
Jackie
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JDH
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Re: END OF MY ROPE!!!
« Reply #10 on: Oct 21st, 2005, 4:09pm » |
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Kate,
Try and take Bob up on his offer if at all possible. Being able to talk to someone face to face who knows what you're going through can be a big help IMO.
And if not, maybe you can make it to Davenport IA in January and you can meet a whole bunch of us clusterheads. See the Meetings and Gatherings page for more on that.
Jim
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9-11-01, to remember is to honor.
It's not what you know, it's what you can prove.
ECH established 1985
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BMoneeTheMoneeMan
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Re: END OF MY ROPE!!!
« Reply #11 on: Oct 21st, 2005, 8:21pm » |
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So sorry Kate to hear of such a rough time.
Just a couple things:
Melatonin/Benadryl cocktail every night. Bout 9 to 12mg melatonin, 50mg benadryl 1 hour before lying down. This helps lots of people.
Look at the clusterbuster treatment. There are many that have found relief using that method. I will be doing this treatment tomorrow, have done it before.
Just 1 more thing. I used to eat lots of painkillers too. Percocet, vicodin and dozens of OTC pills daily. It turns out that pain killers tend to hurt clusterheads more than help. I noticed for sure that when i stopped taking 15 to 20 pain pills a day, my suffering went down greatly.
I wont touch a pain pill now.
Hope that helps. Really hope you get relief soon. Something has to work.
BMonee
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"Fool me once, shame on, shame on you. Fool - can't get fooled again"
Think of how stupid the average person is, and then realize half the population is stupider than that.
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E-Double
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Are we ourselves?
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Re: END OF MY ROPE!!!
« Reply #12 on: Oct 21st, 2005, 8:34pm » |
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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